Taking Notes

boys The weapon was a blood pressure cuff, but it may as well have been a loaded syringe. Same with the scale before it, and the stethescope. But who am I to judge anyone for letting fear turn their shadows into monsters? Who’s to say I didn’t even teach him that?

The nurse fastened the Velcro and began pumping. The Kid kicked and screamed in my arms. I launched into “Old McDonald,” the notes deposited directly from my mouth into his ear, the chaos continuing around us.

“You have a good singing voice, Mom,” she told me, which is the point at which, if I knew her better (at all), I would have laughed and said she was full of shit. So I just laughed. The cuff came off and TK calmed down, back from 60 to zero in two seconds. In a few minutes we’d see the neurologist, who would again give his professional version of a shrug: no new findings, maybe some more blood work, it’s a mystery. He’s a mystery.

Tell me something I don’t know.

Even the answers, the charts with his name on them, the codes attached to his diagnoses, they all come with question marks attached. Which makes them less than answers and more like…guesses? Nothing quite fits. On a good day, this is good news: the idea that it’s not all figured out can carry hope. On a bad day, in a bad moment, it pierces my core: that ultimate discomfort with all things mysterious and uncertain, that feeling of being a victim or, worse, a target. Unloved. Uncared for.

Yet I’m told the opposite is true.

And the trenches of parenting–these dark moments in clinical settings, the mundane middle-of-the-night disturbances, all of it—are opening me up painfully, but undeniably, to the possibility of that truth being real. Being…well, true. Because if I can hold him down while both of us cry, believing that there’s a purpose that outweighs our tears? Then maybe I know more about love and grace than I think I do.

He’s started music therapy, and like all new things it’s taking him awhile to warm up to it. But I catch him listening in that way he does, the way that looks like he’s not paying attention at all until he hums the exact tune that was playing, and later he pulls my hand and we go to the piano, where he plays each note with a turn to me, asking me to name them. What if I hadn’t taken those God-forsaken piano classes twenty-something years ago, the ones that kept me in a closed room for thirty minutes a week, that forced me onto a stage where I sweated and fumbled and, finally, played? But I did, and now I know the name of each note, of each key, so that I have an answer for him when he asks. “C, D, E,” I say, then sing, to him, and after awhile he stops asking and just plays.

Later that day he laughs when I grab onto the tree branch and throw my legs up too, hanging there like a goof…or maybe like a child, like I haven’t in twenty-something years, because I don’t trust many things to hold me these days. But it makes him laugh, so I trust, and it holds, and there we are: he’s watching and laughing, and I’m hanging.

The voices get louder later in the day, after the sun has gone down and I’m bone-tired and lying there beside him in his bed, where he wants me to rub his back and arms, and it’s hard to do the dutiful thing: feel thankful. See it as blessing. Trust I am held. He grabs my hand again, and sometimes it’s the little things that make me feel like I’m going crazy, not the clinical but the mundane moments that threaten to undo me as my head becomes a playground for shadows that sound like monsters. He’s drifting off to sleep and I’m crying. “Why are you so cruel?” I ask God. “Why would you make it so hard for him? Why are you doing this to us?” I get no answers, just the even breathing of the boy beside me, and between that and the fact that I know I haven’t been left, but listened to, I feel an odd peace. A peace that coexists with question marks, with anger, with frustration and joy and all of it. A grace that allows my yelling and ambivalence and all-over-the-place-ness because it is bigger than all those things and will hold me while the questions marks unfurl into periods. Into a story.

Mystery is the hardest thing for me. And yet I know that it’s the language of grace. The language of TK.

The next day I have a good run for the first time in weeks. I think about how there are no songs made of just one note, and how the most beautiful tunes are the fullest ones—how they resonate in a place beyond my ordered exterior and into the depths of me, where fear and shame reside alongside breathless wonder. I think about how grace makes for a love that hears my cry and doesn’t run away, but stays. And I run, feeling lighter than I have in awhile. The music in my ears plays, and I swear I can hear every single note.

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